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Independent Living

UNIT 4 INDEPENDENT LIVING


Structure
4.1 Introduction
4.2 Objectives
4.3 Concept of Independent Living
4.4 Independent Living Movement: History
4.5 Philosophy of Independent Living Movement
4.6 Independent Living & Traditional Rehabilitation Paradigms
4.7 Key Services of Independent Living Centres
4.8 The Role of the Rehabilitation Psychologist in Independent Living
4.9 Let Us Sum Up
4.10 Unit End Exercise
4.11 Suggested Readings
4.12 Glossary

4.1 INTRODUCTION
Independent Living is a philosophy and a worldwide movement of people with
disabilities who proclaim to work for self-determination, self-respect and equal
opportunities.
Independent living movement is a program of services enabling severely disabled
individuals to exercise more freedom of choice and control over their lives. The
goal of Independent living movement is to remediate personal and environmental
difficulties.
Unfortunately, barriers exist for most persons with disabilities, barriers to
employment, public transportation, social and recreational activities, and many
other aspects of everyday life. Some barriers are obvious, like an unramped
entrance to a building, the lack of interpreters or captioning for persons with
hearing impairments, or the lack of brailed or recorded copies of printed materials
for persons with visual impairments. Other barriers are less obvious and frequently
more damaging, commonly-held stereotypes that categorize persons with disabilities
as objects of pity or scorn, resulting in low expectations of what people with
disabilities can achieve. Therefore, in order to fight against the discrimination the
independent living movement was started.

4.2 OBJECTIVES
After going through this unit, you will be able to:
 Discuss concept of Independent living movement;
 Describe the history of Independent living movement;
 Discuss the philosophy of independent living movement; 5
Community Based  Explain assumptions of independent living movement; and
Rehabilitation
 Examine the perspectives of Independent Living Movement in Asia.

4.3 CONCEPT OF INDEPENDENT LIVING


The independent living movement can be characterized as a political or civil rights
movement involving disabled individuals who have been denied access to those
rights.
The civil rights movement with its emphasis on entitlement and benefit rights has
provided an effective action oriented model for the independent living movement.
The concept of independent living is opposite to that of the institutions, and a
movement away from dependency on parents and professionals. Essentially,
independent living means the opportunity to make decisions that affect one's life,
being able to pursue activities of one's own choice. Independent living does not
necessarily mean living alone; rather, it means self-determination, making choices,
being allowed to fail, and strive for opportunities to experience success and
having access to appropriate services.
In most countries, proponents of the independent living movement claim
preconceived notions that a predominantly medical view of disability contributed
to negative attitudes towards people with disabilities, portraying them as sick,
defective and deviant persons, as objects of professional intervention, as a burden
for themselves and their families, and dependent on other people’s charity.
These images, in the independent living analysis, have resulted in the lack of
encouragement for raising families of their own, getting education and work,
which, in turn, result in persons with disabilities making up a large portion of the
poor in any country.
The disability rights movement asserts that people with disabilities are human
beings with inalienable rights and that these rights can only be secured through
collective political action. It arises out of the realization that, as historian Paul
Longmore has written, "Whatever the social setting and whatever the disability,
people with disabilities share a common experience of social oppression."
People with disabilities throughout history have been defined as objects of shame,
fear, pity, or ridicule. Persons with disabilities have been incarcerated, sometimes
for life, in state institutions and nursing homes. As recently as 1979 it was legal
for some state governments to sterilize disabled persons against their will. Other
laws prohibited people with certain disabilities from marrying, or even from
appearing in public.
Social prejudice kept disabled children out of the public schools, and sanctioned
discrimination against disabled adults in employment, housing, and public
accommodations. This prejudice has been exacerbated for people of color, women,
and for members of ethnic and sexual minorities. Although groups and individuals
have since the nineteenth century advocated for an end to this oppression, large
scale, cross-disability rights activism, encouraged by the examples of the African-
American civil rights and women’s rights movements, did not begin until the late
1960s.
In recent years, disabled persons have demonstrated an increasing desire to
participate in the making of all decisions that affect them both directly and indirectly.
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The independent living movement has been an important part of this broader Independent Living
movement for disability rights. It is based on the premise that people with even
the most severe disabilities should have the choice of living in the community. This
can be accomplished through the creation of personal assistance services allowing
an individual to manage his or her personal care, to keep a home, to have a job,
go to school, worship, and otherwise participate in the life of the community. The
independent living movement also advocates for the removal of architectural and
transportation barriers that prevent people with disabilities from sharing fully in all
aspects of our society.
Although there were earlier experiments with this concept, it wasn’t until 1972
that the first Center for Independent Living was founded by disability activists Ed
Roberts in Berkeley, California. By the turn of the century there were hundreds
of such centers all across the world.

4.4 THE INDEPENDENT LIVING MOVEMENT:


A HISTORY
In the Beginning
A look at how people with disabilities have been treated by various cultures
throughout history shows how the movement for independent living began. From
nomad tribes to social change throughout the world, people with disabilities have
played various roles in society and cultures.
Nomads considered people with disabilities useless because they could not
contribute to the wealth of the tribe, and often left them to die whenever the tribe
moved on to a new location. The Greeks sought rational reasons for disability.
Typically, philosophers concluded that diseases like epilepsy were a disturbance
of the mind, and that since verbal communication was essential to learning, deaf
people could not learn.
Earlier disabled people were treated with sympathy and pity, and often non
disabled used to feel superior to them. Many non disabled believed that a disability
represented an impurity, and that people with disabilities needed to be saved.
With a growing belief in supernaturalism during the Middle Ages, came another
attitude steeped in fear. People with disabilities were often ridiculed, and persecuted
because society thought the disability represented the manifestation of evil.
Medical care and treatment for people with disabilities were introduced during the
Renaissance. For the first time, education was available and they were encouraged
to actively participate in their communities.
By 1880, almshouses for the poor and for people in need of some human service
were opened, and most states and territories had programs for people with
disabilities. In most cases, however, this meant that people who were blind, deaf,
mentally retarded or otherwise physically disabled were sent to large institutions
for their entire lives.
With movement to the western frontier, many people began to believe that local
initiatives could help to eliminate social ills, and at least some people with disabilities
were no longer condemned for not being able to earn their own living. Unfortunately,
even as services became available, people with disabilities were often still segregated
from mainstream society, and only lived in integrated settings among rural families.
The concept of broad scale rehabilitation services was introduced following World 7
Community Based War - I, when rehabilitation programs were designed for the returning disabled
Rehabilitation
veteran as the need for training or re-training was finally recognized. The first
federal program for people with disabilities was called the federal-state vocational
rehabilitation system.
No federal legislation seriously considered other major services for people with
disabilities until the tide of social changes during the 1960s. Although the social
security system provided benefits to those who had earned sufficient income over
a long enough time and had become disabled, there was no attempt to broaden
the base of services to people with other kinds of disabilities beyond the vocational
approach.
Later with the introduction of legislation and strategies like community based
rehabilitation, persons with disabilities gained the encouragement and few
opportunities to get education, employment and community participation.
In India the idea of independent living emerged before a decade when the persons
with disabilities (Equal Opportunities, Protection of Rights and Full Participation)
act was enacted in 1995. In December 1996 joint committee for disability rights
started a demonstration to criticize a default of law and demand the distribution
of the budget for the empowerment of persons with disabilities.
In 1997 the term "Independent Living" first appeared in the resolution adopted in
the leadership training seminar organized by the DPIAsia Pacific Regional Council.
Later with the establishment of independent living centers, the life span needs of
persons with disabilities were identified and action plan was planed to meet the
needs and integrate them into the mainstream. But there is still a long way to go
to totally integrate them into the mainstream communities and see them function
to the near normal level. This goal can only be achieved through the coordinated
efforts of parent’s professionals, communities and the political systems.

4.5 PHILOSOPHY OF INDEPENDENT LIVING


MOVEMENT
The Independent Living philosophy postulates that people with disabilities are the
best experts on their needs, and therefore they must take the initiative, individually
and collectively, in designing and promoting better solutions and must organize
themselves for political power. Besides de-professionalization and self-
representation, the Independent Living ideology comprises de-medicalization of
disability, de-institutionalization and cross-disability i.e. inclusion in the ILMovement
regardless of diagnoses.
In the Independent Living philosophy, disabled people are primarily seen as citizens
and only secondarily as consumers of healthcare, rehabilitation or social services.
As citizens in democratic societies, the IL Movement claims, persons with disabilities
have the same right to participation, to the same range of options, degree of
freedom, control and self-determination in every day life and life projects that
other citizens take for granted. Thus, IL activists demand the removal of
infrastructural, institutional and attitudinal barriers and demand the acceptance.
Depending on the individual’s disability, support services such as assistive technology,
income supplements or personal assistance are seen as necessary to achieve
equal opportunities. As emphasized by the IL Movement, needs assessment and
service delivery must enable users to control their services, to freely choose
8 among competing service providers and to live with dignity in the community.
Supporting the movement and utilizing its work has become an important Ingredient Independent Living
of many countries’s social policy.
The medical model of disability, which emerged in the 18th century, led professionals
to perceive and treat people with disabilities as pitiful and child-like. Disability
was then viewed as a medical issue that required the services of trained
professionals, rather than the result of divine intervention. Rehabilitation originated
in the medical model and flows from "medical" practice. This is one reason why
a medical evaluation or diagnostic is necessary for service delivery.
Independent living originated in reactions to the dehumanizing process inherent in
the medical model and the need for civil rights, equal access and equal opportunity.
The assumptions are -
I. The "Medical Model" assumption
a) Physician is technically competent expert
b) Medical care should be administered through a chain of authority wherein
the physician is the principal decision-maker
c) The "patient" is expected to assume the "sick" role
d) The main purpose of medicine is the provision of acute/restorative care
e) Illness is muted primarily through the use of clinical procedures such as
surgery, drug therapy and the "laying on of hands."
f) Illness can only be diagnosed, certified, and treated by trained
practitioners.
II. The Sick Role - People with disabilities are expected to play this or the
"impaired role; The sick role consists of two interrelated set of exemptions
and obligations:
a) A sick person is exempted from "normal" social activities and
responsibilities depending on the nature and severity of the illness
b) A sick person is exempted from any responsibility for his/her illness.
He/she is not morally accountable for his/her condition and is not
expected to become better by sheer will
c) A sick person is obligated to define the state of being sick as aberrant
and undesirable, and to do everything possible to facilitate his/her recovery
d) A sick person is obligated to seek technically competent help and to
cooperate with the physician in getting well
Because disability is often an irrevocable part of a person's existence, the person
with the disability begins to accept not only the condition but also the belief that
his/her very own personhood is aberrant and undesirable. Moreover, he/she begins
to accept the dependency prescribed under the sick role as normative for the
duration of the disability.
III. The Impaired Role - The impaired role is ascribed to an individual whose
condition isn't likely to improve and who is unable to meet the first requirement
of the sick role, i.e. the duty to get well as soon as possible. Occupants of
the impaired role have abandoned the idea of recovery altogether and have
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Community Based come to accept their condition and dependency as permanent. The impaired
Rehabilitation
role is not a normative one or one prescribed by the medical model, but it
is a role a disabled person is allowed to slip into as the passage of time
weakens the assumptions of the sick role. The dependency creating features
of the medical model and the impaired role are most pronounced in institutional
settings.
IV. Centers for Independent Living represents the reality of the dehumanizing
process inherent in the medical model and the need for civil rights, equal
access and equal opportunity. They also represent the convergence of five
other social movements of the 1960s.These new organizations, run by people
with disabilities for people with disabilities, were trying to respond to a rising
demand from the disabled community for control over their own services.
They are-
a) Civil rights movement led by African-Americans during the 1950s and
1960s. People with disabilities pointed out that, just like other minorities,
they were being denied access to basic services and opportunities such
as employment, housing, transportation, education, and the like.
b) Consumerism, a movement led by well-known national figures such as
Ralph Nader, contributed another element to the growing disability rights
and independent living movement. People with disabilities were, for the
first time, stressing their role as consumers first and "patients" last. In
other words, individuals with disabilities wanted the right to educate
themselves and decide for themselves what services and products they
wished to purchase. As "clients" or "patients," people with disabilities
were rarely given any autonomy or power over the services and products
they would use.
c) Self-help is nothing new, but organized self-help programs are relatively
new. The original non-professional, self-help program which is best
known is Alcoholics Anonymous. Having a severe disability may not be
exactly the same as having a problem with alcohol, but a strong parallel
remains. Leaders of the disability rights and independent living movement
believe that only persons with disabilities know best how to serve
others who have the same or similar disabilities. The concept of "peer"
counseling and self-help groups are the most common methods of self-
help.
d) De-medicalization De-medicalization for people with disabilities means
removing the involvement of medical professionals from the daily lives
of individuals with disabilities. People with disabilities are not "sick."
They are disabled and not dependent upon medical professionals for
everyday needs. The perfect example of the "de-medicalized" service
for persons with severe mobility disabilities is that of "personal assistance."
Personal assistance is consumer-directed services whereby the person
with the disability recruits, hires, trains, manages and fires his/her own
personal assistants. When consumers with disabilities are allowed to
buy the services they need for daily survival from whomever they choose,
they have "de-medicalized" the service. Unfortunately, the vast majority
of services provided to people with disabilities are still rooted in the
"medical model," regardless of the individual's needs and desires.
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e) De-institutionalization, which began in response to large mental health Independent Living
facilities for those who are mentally ill or mentally retarded, follows the
principles of de-medicalization. Most institutions are staffed by medical
personnel, even if residents are not ill. Since many such individuals are
only disabled by some permanent condition, placement in institutions is
inappropriate and far more costly than providing those same residents
with the support services they need to live in their chosen communities.
The disability rights and independent living movement is working towards
the development of those other non-medical and community-based
services which would assist institutionalized persons to move back to
their home towns or areas.
The disability rights and independent living movement is a compilation of all the
above mentioned movements as they pertain to and are defined by people who
have disabilities.
Since most traditional rehabilitation programs are built upon the "medical model"
of service delivery, the disability rights and independent living movement promotes
a completely different approach to service delivery. Independent living as a
movement is quite unique compared to existing programs and facilities serving
people with disabilities. Centers for independent living across the nation are working
towards changing their communities rather than "fixing" the person with a disability.
The following chart shows the changes brought by the independent living movement
in the lives of person with disabilities.

4.6 INDEPENDENT LIVING & TRADITIONAL


REHABILITATION PARADIGMS

Rehabilitation Paradigm Independent Living Paradigm


Definition of the problem physical or mental impairment; dependence upon professionals, family
lack of vocational skill members and others
Focus of the problem in the individual (individual in the environment; in the medical and/
needs to be "fixed" to or rehabilitation process itself
fit into society
Solution to the problem professional intervention and • barrier removal
treatment • advocacy
• self-help
• peer role models and counseling
• consumer control over options
and services
Social role individual with a disability is a individual with a disability is a
"patient" or "client" "consumer" or "user" of services and
products
Who controls professional "consumer" or "citizen"
Desired outcomes maximum self-care gainful independence through control over
employment ACCEPTABLE options for everyday
living in an integrated, community-based
environment

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Community Based
Rehabilitation 4.7 KEY INDEPENDENT LIVING SERVICES:
The services of independent living centers are as follows-
 Social and recreational services
 Advocacy
 Peer counseling
 Attendant care
 Removal of architectural barriers
 Adaptive housing
 Adaptive transportation
 Training in independent living skills
 Reading or interpreting services for individuals with visual or hearing
impairments.
Overall, the independent living service model places greater emphasis on changing
the environment than on changing the person. Therefore, the major focus is on
adapting the environment to the person rather than on adapting the person to the
environment.
Check Your Progress
a. In which year the first Independent living movement centre started
1. 1960
2. 1880
3. 1972
4. 1980
b. Independent living movement was first started in which country
1. Sweden
2. India
3. California
4. Europe
c. Five other social movements of the 1960s and 70s contributed to the
evolving movement for independent living for people with disabilities
what are they.
..........................................................................................................
..........................................................................................................
..........................................................................................................
d. Mention any two important assumptions of Independent living movement.
..........................................................................................................
..........................................................................................................
..........................................................................................................

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Independent Living
e. mention any two independent living centre services
..........................................................................................................
..........................................................................................................
..........................................................................................................

4.8 THE ROLE OF THE REHABILITATION


PSYCHOLOGIST IN INDEPENDENT LIVING
The rehabilitation psychologist plays a crucial role in independent living programs.
The rehabilitation professional must be committed to the normalization philosophy,
advocacy for human and legal rights, individual program planning, and
communication skills. In addition the rehabilitation psychologist must be proficient
in interpersonal and case management skills. As case managers, psychologists are
involved in case finding, need analysis and service provision.
Independent living is a concept reflecting the growing recognition by individuals
with severe disabilities of their capability to gain greater control over their lives
given certain services and removal of environmental barriers. The emphasis is on
active participation in valued social roles such as working, owning a home, raising
a family and being free from segregation and isolation.

4.9 LET US SUM UP


Independent living means the opportunity to make decisions that affect one's life,
being able to pursue activities of one's own choosing. Independent living does not
necessarily mean living alone. Rather, it has to do with self-determination, making
choices, being allowed to fail, and having access to appropriate services.
Five other social movements of the 1960s and 70s contributed to the evolving
movement for independent living for people with disabilities. These were: Civil
rights movement, Consumerism, Self-help, De-medicalization, De-institutionalization.
In 1972 that the first Center for Independent Living was founded by disability
activists in Berkeley, California. IL movement begins in Asia soon on the basis of
the heightened awareness of disabled themselves towards their human rights. The
Independent Living philosophy postulates that people with disabilities are the best
experts on their needs, and therefore they must take the initiative, individually and
collectively, in designing and promoting better solutions and must organize
themselves for political power

4.10 UNIT END EXERCISE


Gather information about when the Independent living Movement started in India,
what were the major goals of the Independent living movement, and how it lead
to the improvement of lives of persons with disabilities.

4.11 SUGGESTED READINGS


DeJong, Gerben. Independent Living: From Social Movement to Analytic Paradigm,
Archives of Physical Medicine and Rehabilitation 60, October 1979. 13
Community Based Wolfensberger, Wolf. The Principle of Normalization in Human Services. Toronto:
Rehabilitation
National Institute on Mental Retardation, 1972.
Maggie Shreve, The movement for independent living: A Brief History, ILC Training
Module (1982).
Web resources
https://independencefirst.org/resources/disabilityresources/independent_living.asp
http://www.crinet.org/index.php

4.12 GLOSSARY
Independent living movement: A social movement asserting that people with
disabilities should have the same civil rights and life choices as people without
disabilities.
Medical Model: focuses on the physical and biologic aspects of specific diseases
and conditions.
Civil right movement: political movement for equality before the law

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